MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Expand/ Collapse Topic
 
Replies By
View Topic
tmelanio's picture
Replies 1
Last reply 5/26/2015 - 2:37am
Replies by: Anonymous

In great health at 67 and retired in the rural community of Nalcrest, Polk County, Florida, I chose the cheapest advantage plan I could find, saving over $300 a month over my previous plan which I suspended.  I can always go back or choose a better palan during open season.

Because my plan does not authorize routine skin check-ups, my PCP picked a random blemish to be checked out by a participating dermatologist.  On February 11, 2015, his nurse found a suspicious spot elsewhere on my right forearm.  I got a call right away that it was melanoma.  Oblivious, I thought nothing of it.

On March 2, I was shocked at how much the dermatologist cut away for such a small speck, but soon afterward I got a call that the margins were too small and that I had stage 2 melanoma.

The earliest available appointment was April 21 for one of only two oncology surgeons at the Lakeland Regional Cancer Center which is approved by the Commission on Cancer.  He said he would perform a wide excision and remove 2 lymph nodes.  The earliest he could do it was May 7.

My plan requires all testing to be routed through my PCP, a round-about way apparently foreign to everybody.  I personally had to play phone tag between the Cancer Center, my PCP, and health plan to clear up repeated miscommunications and misunderstandings before my pre-op testing was approved. Labcorp and ATR waiting rooms were full and obviously low income. 

Right up to the afternoon before my scheduled May 7 surgery, I was assured that I would get an automated call informing me of what time to show up.  Just after 5 PM I received the automated call informing me to check in 2 hours before my 2:05 PM surgery.

May 7, 10:30 AM, I received a call asking why I wasn't there for a 10:00 AM procedure for which a medical team was waiting.  When I told her about the automated call she apologized - a nurse was supposed to have called me.

My girlfriend, Julie, was told that she could accompany me every step of the way.  However, she was left in a room to which I was to return.  She was forgotten for over an hour and a half until a nurse came by and asked what she was doing in there.  She was told the surgery would last 2 hours so she went to the hospital cafeteria to eat.  The surgery was over in 40 minutes and she missed speaking personally with the surgeon.

Immediately before the surgery, a kid came by with some papers to sign.  I was hooked up on the gurney wearing nothing but the gown and of course I didn't have my glasses. On retrospect I believe it was giving him permission to insert the breathing tube for the anaesthesia.  Afterward I had a miserably raw throat and was coughing up gobs of green phlgm for 3 weeks. It hurt to swallow. I read online that this is preventable and is dependent upon the skill and technique of the anaesthetist.

The follow-up was on May 18 with a nurse practitioner in lieu of the vacationing surgeon.  She balked twice before answering my question.  Julie burst into tears when she said one of my lymph nodes tested positive.  I asked what next and she replied, "Chemo". I asked how much cancer was in the positive lymph node and after looking at her clipboard, replied, "I don't know". She reiterated the surgeon's assertion that he would take out all my lymph nodes should one test positive.  She prescribed a PET scan and brain MRI.  She scheduled my next appointment with her since the surgeon was fully booked for the month.  June 2 was chosen because he would be in a nearby wing and she might be able to get him to drop by.

Again I played phone tag trying to get approval for the PET scan.  May 21, on my way to the mobile unit, I received a call informing me that it would have to be rescheduled because it had not been approved yet. From my car I made a couple of calls clearing some blatant miscommunications before she called back with an Okay.

Yahoo! The PET scan is negative.  I would have not known until long after Memorial Day had I not called and insisted. However, I learned some perhaps dated info that PET scans have trouble detecting cancer that is less than 8 cm, which seems awfully big to me. How accurate are they?

Cancer.net states that the survival rate is the same for patients who elect not to have lymph nodes removed, and that because of this, many patients choose to leave them alone to avoid probable complications for life. Immunotherapy does not increase lifespan, and even with chemo and lymph node removal, recurrence is 27%.  Are there any stats for watch and wait?

Brain MRI scans are not available in Lakeland until the middle of June, so I am having one in Plant City May 28.  If that is negative also, am I considered NED?

I have gone cold turkey and removed sugar and processed foods from my diet.  Eating as much as I want, I now consume foods which strengthen the immune system and I am losing weight.

I feel like my June 2 appointment with the nurse is doc-in- the-box assembly line care.  I know I need a melanoma specialist. I am long registered to receive care from any Veteran's Hospital in the country. Open season to change plans is at year's end.

Any insight or advice would be sweet. Thank you.

 

 

 

Login or register to post replies.

Husband had 4 year scan since his recurrence in 2011 and is NED.  He was diagnosed as stage 3(b) or 3(c) depending on the institution.  Although it is always in the back of our mind, it doesn't define us.  We live more appreciatively, laugh louder, empathize deeper, and play harder (we still work too).  Feeling optimistic with the recent medical advances in the melanoma field and wishing you all the best in your journey.

Login or register to post replies.

I don't recall when I subscribed to this weekly email digest, but this week's installment had a couple of interesting articles.

Disclaimer (or as everybody loves to use at work these days: tl;dr): I didn't search Celeste's blog first, so she may already have written about these.

http://melanomanewstoday.com/2015/05/22/researchers-discover-melanoma-in...

Talks about the discovery of a pathway (WNT/beta-catenin) that inhibits T cells from entering a tumor. The article hypothesizes that patients lacking TIL cells do not benefit from immunotherapy as much as those with them. This opens the door for investigating how to block the WNT/beta-catenin pathway to let the TIL cells in.

The second, http://melanomanewstoday.com/2015/02/26/melanomas-addiction-to-glutamine..., talks about melanoma's need for glutamine to survive. They found that melanoma cells die without it.

- Paul.

Login or register to post replies.

las630's picture
Replies 2
Last reply 5/25/2015 - 3:27pm
Replies by: Bubbles, Toby0987

Good morning,

I had a mole removed from my leg about a week and 1/2 ago.  The dermatologist called me last week and said that it came back as malignant melanoma and that I needed to see a surgical oncologist.  I saw the surgical oncologist on Thursday and they said I need to have a wide excision and a SLN biopsy.  However, my surgery date is not until June 19th.  The waiting is kind of making me crazy!  :(

 

My path reports from the shave biopsy showed malignant melanoma, 1.2mm breslow thickness, positive ulceration, 2-3 mitoses per mm2.  Can anyone tell me the statistics of someone who ended up having lymph node involvement with this type of path report??

 

Thank you,

Lisa

Login or register to post replies.

tcadwallader's picture
Replies 3
Last reply 5/25/2015 - 12:54pm
Replies by: Anonymous, tcadwallader, _Paul_

I am new to this community but I am frantically searching for answers, reassurance, etc.  My 9 year old son has multiple moles on his back and neck.  They have all been checked by our pediatrican within the last year and have "looked good".  Within the last 9 months I have noticed a pink, raised mole that has rigid boarders and seems to be growing quickly on his back.  I took him to the dermatologist and they referred to it as an "ugly duckling" and recommended doing a shave biopsy right away.  I am worried sick and wondered if anyone else has had a similar experience?!?!?

Login or register to post replies.

5dives's picture
Replies 1
Last reply 5/24/2015 - 12:04am
Replies by: _Paul_

Hello all, 

I was diagnosed stage 3B in June of 2014 and so far have been NED ever since. At my last appt with the derm, she mentioned a mole she wanted to keep an eye on. After that visit, I found an app I've been using to keep track of some moles. It asks you to take a picture of your mole with a reference item (dime or penny) to help measure the mole. I know some of you have been looking for apps to keep track of moles, so I thought I would recommend it here. It's called Mole Mapper and its available for IOS and Android. 

So...I have two moles that appear to be changing. I'm seeing the derm on Wednesday to have them removed, but as many of you have experienced, my anxiety and imagination are out of control. I know what I'll have to go through if they are new primaries, and I'm not exactly eager to relive that experience. If anyone wants to try to talk me off a ledge, I'm definitely open to that. :-) 

My question: Have any of you had an evolving / growing mole that turned out to be nothing?

I'm including the photos from the app just as evidence of how the app works. 

https://www.dropbox.com/s/758fkvmfkuux1qt/filename?dl=0

https://www.dropbox.com/s/wfv2ecx8k08yp4m/filename%20%281%29?dl=0

 

Best, 

Elaine

 

http://melanomadame.blogspot.com/

Login or register to post replies.

CourtneyT's picture
Replies 15
Last reply 5/26/2015 - 2:03am

Hi there,

I am female, 37 years old, single with no children. I mention this because I don't really have a network of people who understand this disease or a support group close to me. 

On March 9, 2015, after a lymph node was removed in my left groin area (due to pain and swelling), I was told the dissection showed an aggressive form of Melanoma in two lymph nodes. I took a leave of absence from work in NC and relocated to Baltimore. All my specialists and providers are at Hopkins now. I have had all the lymph nodes removed in my groin, as well as all the usual tests: PET, CT, EUS, EGD and multiple biopsies. 

The next step is really where all my questions stem from and I cannot seem to find the answers. I begin Interferon in a week and keep forgetting (really get tongue tied) to ask my physicians, despite even writing down questions. My interferon protocol is for 12 months, 1x a week injections I can do at home; however I have been reading that the first month is done at the hospital (inpatient?, IV?)?  Can anyone walk me through the process step-by-step or at least the first month. It would be especially great if someone has done it at Hopkins. 

I am categorized as Stage IIIC 

Lastly, perhaps I should start a different thread for this but can someone help me with how they dealt with the side effects of the treatment?  I'm already in a lot of pain in my stomach, stressed out and have horrible headaches.

On a side note, I have switched my diet to all organic primarily vegetables and fruits (75/25) and am very careful about what I eat.  Prior to this, I was very athletic and healthy, running marathons and could still flip around being that I was a gymnast and still coached on the side.

Thank you so much in advance!  God bless all of you and my prayers will be with everyone and be hoping for the best in their journey.

Courtney

 

 

 

Login or register to post replies.

_Paul_'s picture
Replies 5
Last reply 5/25/2015 - 4:48pm

I remember quite distinctly sitting in my new oncologist's office last year on Wednesday, September 10. I had had a second recurrence, and I was sitting in his office to discuss the results from a PET of two days earlier. My prior melanoma oncologist had accepted a position at Stanford, and I think this was the initial meeting with new one.

I had had quite a few scans up to this point, but this time it was different. All the prior ones had shown NED. But this time I had mets in lungs, liver and gall bladder. I remember asking him what my prognosis was, and he said the conventional outlook was less than a year. So in my mind I assigned a drop-dead date a year out (apologies for the bad pun). I would be lucky if I made it all the way to midnight on September 9, 2015.

The big problem of course is the uncertainty. What did less than a year mean? A couple of months? Six?

In the past, I would just take time off work to meet with my oncologist when there were scan results to listen to, then go back and finish off the day at work. That had been my plan on this day too. But after hearing the results, I called my boss, and told him I would not be coming back. Maybe ever.

My next thought was I better enjoy my life while I still feel good so I booked a trip to Hawaii and in the meantime took off on a road trip throughout the south west.

After a few weeks I still felt pretty good. I had some side effects from treatment (ipi) but nothing from the cancer. So then I sheepishly returned to work, thinking I had overreacted. But everybody there welcomed me back and the embarrassment quickly faded.

I recently started going to a cancer support group because I wanted to see how other people deal with this strange state of existence. That’s when I heard someone jokingly use the term “expiration date”. That person had outlived hers and I am beginning to think I will too.

What I found was that over a period of just a few months, my fear of the unknown (unknown being how much time is left) has gradually been replaced with this strange outlook. It still seems quite likely that any chance of living to a ripe old age has been greatly reduced, but if I make it to my expiration day, that seems like a reason to celebrate!

I don’t think I am the only one that feels this way. I suspect there are a lot of us that go through a similar process. The end result is that for now anyway, my day to day life from the outside looks unchanged. But I have been left with this heightened awareness that I better appreciate each day of what is ultimately an uncertain future for anyone alive.

I hope someone can relate to this.

Paul

Login or register to post replies.

Mhardes's picture
Replies 2
Last reply 5/23/2015 - 1:46pm
Replies by: Mhardes, Janner

Sorry..still new to the site .. not sure if I should reply to the old topic or create a new one . I went to the dermatologist yesterday and had the melanoma superficial spreading removed. I t was a 1cm...before he did it..said that It was th lowest stage above zero.basically as low to ? Situ as it could be. He also said there was no need to see an oncologist and that with the stage its in no one would fault him for not even recommending it..but he knows I have been reading up on it and said if it makes me feel better he will refer me..he said no need though..no though..no one has ever discussed anything past the 1cm as treatment..they did have to do the skin graph so that was fun having two people working..one on each leg.in the end he said all looked great..good thing we got it as it could have been easily mistaken for a bug bite or something else..didnt look like a melanoma..going back in two weeks to take stitches out and j asked him to check me over then we will meet every 3 months for the first two years. I really want to take a breather and stop worrying ..I feel blessed that it elegant the stage it was...am I missing anything or should I be worrying about anything else.?Just want to finalize this bump in the road and move on...looking on my body..see all these other marks...just hoping all done now

Login or register to post replies.

Banders's picture
Replies 1
Last reply 5/24/2015 - 5:13pm
Replies by: Anonymous

Hello:

 

I'm stage 4 metastatic melanoma and yesterday (Friday morning, May 22) I had an oupatient excision in my upper right eyelid.

 

Feeling pretty good a day later (Saturday morning the 23rd) with no pain, but I can't open the eye.  The sheet I was given from the hospital didn't mention this topic and a pretty good google search also reveals no inforation about this topic specifically related to melanoma excisions.  

 

So to the point:  Anyone had an eyelid excision?  After how long were you able to open the eye?  I don't know if I should be trying to open it or the opposite.  

 

Thanks ahead of time for any info.

 

Brett Anderson 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 5/23/2015 - 11:26am

Just curious what people see as the top trials for stage 4 right now. All opinions appreciated.

Thanks

(1 Peter 5:7 NLT). Give all your worries and cares to God, for he cares about you

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 5/24/2015 - 6:04am
Replies by: Anonymous, Linny, arthurjedi007

I had a SNB a year ago which came back positive for melanoma in one lymph gland and I elected to monitor by ultrasound rather than do the CLND.

I just had my three monthly ultrasound check up and the scar tissue where one of the lymph nodes was taken out a year ago now looks bigger and has some vascularity according to the doctor.

The doctor said it didnt look like the melanoma that was taken out in the SNB and was unsure what it was and has referred me for a Pet scan to make sure.

The doctor said all the other lymph nodes were clear on the ultrasound.

Has anyone else had this situation?

Can you just have melanoma in the scar tissue and if so what does this mean as far as treatment options go?

I so dont want to have a CLND as I live alone and dont have anyone to look after me.

 

 

 

 

 

 

Login or register to post replies.

Mhardes's picture
Replies 7
Last reply 5/22/2015 - 10:54am
Replies by: Mhardes, Janner

Hello, I got your message last night and thank you.  I have learned a lot during this process and am embarrassed at times with how I have let this put my life on hold..even had my deductible set aside for my max payout on health insurance.  It has really bothered me.  I guess I have been fortunate so far.  It has been a tough year in my life, in my marriage and I am upset with myself that I waited 1 1/2 years before getting checked again.  I am mostly upset that I have taken so many things for granted when others are so much worse off than me. If you remember, I had a regular checkup and the mole he said was fine a year 1/2 ago,he thought had changed.  He took a biopsy..then called me to get my permission for a second opinion.  I then visited him to get a worse case..as it had been almost 2 weeks. My dermatologist said that he thought it was worse case scenario a melanoma in situ.  He sent it to an expert at Harvard and said that he was one of the best at this.  Fast forward to today...I want to be happy that it wasn't a worse diagnosis...but I just want to hear form an expert that my chances are good...

Here is what I was told by the nurse today:

- she called and pulled up the report - said that it was diagnosed as malignant melanoma with superficial spreading

- she said the expert recommended a 1cm removal and a follow up every 3 months for 2 years and every 6 months until 5 years...( I go every year now) - his exact wording was...recommend a 1cm removal and careful follow up

- said it was early but no stage or anything - but didn't say in situ

- after reading a 1cm tumor is usually stage 1?- but that is what they are taking out

- apparently I don't need to. See an oncologist...so that part of it make me feel better i.e.

- she said that once it's taken out -just need to visit every 3 months

- they have scheduled me for tomorrow to have it removed - I was a little worried about why so soon ( that is how my mind works) then thought, that's good that they want Ito get it done now

- said they may need to do a graft from my leg ( the melanoma is on my back calf)

- you had mentioned in a previous post that this was just a bump in the road and the prognosis was excellent... Does this thought still apply with this final diagnosis?

thank you so much,

mike

Login or register to post replies.

Gordknight's picture
Replies 1
Last reply 5/21/2015 - 9:10pm
Replies by: Janner

I posted a few weeks back about a dark spot that had been in my WLE scar since it started to heal.  Always had dead skin in that area but just thought it was healing differently or I had an ingrown hair or a suture not dissolving.  Anyway it started to bleed and so I had my derm look at it and remove it.

He didnt think it was anything. 

He called me today and said that no melanoma cells were found, but he did say the biopsy found abnormal squamous cells and that I should keep an eye on it.  If it patches or gets a bump or itches etc etc.. I should come back to have more removed though he said it shouldnt be a rush.  Just soonish if I get those symptoms because it could potentially turn into Squamous cell cancer.

My question is:  Has anyone else experienced this?  Would it be normal for abnormal or atypical squamous cells to be in a healing wound from a WLE of melanoma?  Any advice?  What are the chances that it could turn into SCC?  I know its not really a melanoma question but I didnt really know where else to ask it, and because its in a scar from a melanoma removal I thought it might be relevant.  So many of you on here have experienced so much and are far more knowledgeable about this stuff that I.

Thanks in advance!

Login or register to post replies.

Pages